Not listening

[Tatty10]

Hi feeling very low fed up with my consultant and bowel cancer nurse not listening to my symptoms had a bowel resection in August for stage 1 colon cancer and have suffered terrible constipation back and pelvic pain bloating a dragging ache in my bottom and can now only pass stools if I press on my right buttock taking 4 sachets of laxido a day paracetamol for pain but the pain and discomfort never goes away it’s constantly there when I sit stand and walk I get a little bit of relief when I lie down feeling at my wits end should I ask to see a different consultant I’m fed up with been told it’s early days I know something is not right but how can I convince them I’ve asked for another scan but have been told not till next August please help.

[Jazzy1990]

I would go back and demand answers. You know your body more than anyone else. Tell them this isn’t normal and you feel like you can’t function, these symptoms are taking over. They definitely should do something about it.

[Tatty10 in reply to Jazzy1990]

Thanks Jazzy I know something is definitely wrong but just can’t get my voice heard and never had these symptoms before find it hard to describe them I am letting myself down by not insisting they help me, should I go back to my gp and ask to change consultant

[Jazzy1990 in reply to Tatty10]

I’m surprised your consultants not taking you seriously. Why won’t they do another colonoscopy? I think go to your GP and tell them about your symptoms and that you need another colonoscopy as these symptoms are not normal.

[Tatty10 in reply to Jazzy1990]

Thanks will try to sort out a gp appointment this week fingers crossed

[Nicole_GCCA Partner]

Dear Tatty10 ,I'm sorry to hear about the pain you are in and the lack of support from your medical team. Some of the best advice that I've heard from colorectal cancer patients, especially those who have had complications is to switch doctors if you aren't satisfied with the level of care you are getting.

This is your life, your health, and if they aren't taking your concerns seriously, please seek out another team.

I'm sorry that you are having such a rough time. You know your body and if something feels off, it needs to be investigated. You may wish to have a serious conversation with your doctor and nurse explaining your concerns and that you are going to make a change if they don't listen and take your concerns seriously. Or, you may wish to seek out a new team without having that conversation.

We're thinking of you and so sorry that you've been through so much. You deserve a medical team that is supporting you through your treatment.

~Nicole @ GCCA

[Tatty10 in reply to Nicole_GCCA]

Thanks Nicole good advice and I think that’s the way forward for me, I really don’t want to be told you’ve had major surgery it’s early days or try not to let your imagination run away I know that something is not right.

[Nicole_GCCA Partner in reply to Tatty10]

Tatty10 , Please keep us updated on what they say. From what you are describing this is beyond "typical recovery" and needs to be taken seriously. Many many patients and survivors around the world have changed their medical team for reasons similar to yours and are very happy to have done so. You've been through a lot, and the pain and symptoms you are experiencing now need to be taken seriously by your medical team.

We're thinking of you.

~Nicole @ GCCA

[Tatty10 in reply to Nicole_GCCA]

Hi Nicole thank you so much for listening I have been told to expect a letter from my consultant this week and depending on that as to whether he will help or not will be the deciding factor to change consultant will let you know how I get on.

[Wexford1968]

I had the resection done over two years ago and had a little discomfort after but nothing like what you are having I still get some stomach pains even now and constipation but it’s not so bad . I did call the nurse a few days ago and told her of my symptoms and that I am overdue a colonoscopy. But she said there is a long waiting list due to vivid 19 and she would contact me if she gets any news. In your case I would insist on getting a colonoscopy ASAP or if you can go private I would get it done

[Tatty10 in reply to Wexford1968]

Hi Wexford thanks for the reply I can deal with a bit of constipation and a bit of discomfort but this is just really awful how do I get the medical team to listen to me and to stop being condescending and dismissive

[Wexford1968 in reply to Tatty10]

I think you maybe need to get a medical team who are concerned for your wellbeing.i would change my gp I don’t think you should be having those problems after your operation,you know something isn’t right and they need to listen to you

[Mikes21 in reply to Wexford1968]

Hi I just found out I have stage 1 colon cancer at the traverse so I am getting a resection. How are you doing and what stage was yours? I’m nervous as I have lynch syndrome and already have had prostate cancer as I’d that wasn’t bad enough. Any words of advice or encouragement. Thanks Mike

[Wexford1968 in reply to Mikes21]

I was stage 1 so I didn’t need chemo after my surgery. That was 2 and a half years ago and I’ve had 1 colonoscopy and a few blood tests since, I would like another colonoscopy but Covid 19 put paid to that.but I feel good and haven’t got any problems thank god

[Mikes21 in reply to Wexford1968]

Thank God for sure. I’m a big picture guy and I’m worried that once I resect will I get another cc? I guess if I do then get that cut out too

[WthrMtsfan712]

I've been dealing with some fairly severe constipation myself for about the past 2 months. I'm not sure what's causing it yet, but I'm praying I can get down to the bottom of it sooner rather than later since stool softeners are barely helping to relieve it, either. I pray you won't have to wait until August to get help given what it sounds like you're going through.

[Tatty10 in reply to WthrMtsfan712]

Hi constipation is really awful I’ve tried bysocodol that gives me stomach cramps and no indication of when it’s going to work senna tablets work fairly well and overnight but my consultant says I should be taking laxido powders 4 times a day and they don’t work either have also tried glycerine suppositories they usually work within half an hour but make me feel that my bowel movement is not complete hope you manage to find a solution good luck.

[Nicole_GCCA Partner in reply to WthrMtsfan712]

Hi WthrMtsfan712 ,Do you have an appointment coming up with your GI doctor to discuss your options for treating constipation? It might be helpful to make a list of all of the over the counter options you've tried, and rate the success you've had with them, that might help your doctor in determining what prescription (or over the counter) medications you might have the best luck with. Hope you get some relief soon!

~Nicole @ GCCA